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Tuesday, June 14, 2011

Sprycel (Dasatinib); My Return; A New Found Sadness Settles In

I battled bronchitis for a month. This battle included a short respite from my daily dose of Sprycel. Sprycel is often referred to as oral chemotherapy. My understanding is that is a TKI inhibitor. This inhibitor blocks the abnormal protein called BCR-ABL, hopefully resulting in a molecular remission.

There are many side effects that come along with Sprycel. I suppose the most life threatening one is a heart rhythm condition called “QT prolongation.” The other side effects include low white cell counts, that may lead to infections (hence the bronchitis), low platelet counts (which could cause bleeding), a collection of fluid in the chest (probably why my doctor took me off of it for ten days, while I had bronchitis), diarrhea, headaches, edema, low blood calcium levels, slight abnormalities in liver function tests, tiredness, muscle pain, skin rash fever, hair loss and yes there are more. Just like any drug, there are risks. One must always weigh the risks against the outcome. In my case, I have no option; it is either live with the side effects or die. It is a simple choice.

Not ingesting the Sprycel for ten days gave me the opportunity to revisit the person that I was before I got leukemia. I don’t really know how to explain this, other than despite the fact that I had bronchitis; I began to feel much more energetic and carefree. I thought that maybe it was because I was feeling better and getting over the bronchitis, but this happier, livelier person kept emerging, day after day. The sun just seemed to shine brighter. Towards the end of the ten days, I felt really good; I was really happy and full of life. I felt like myself again. I hadn’t even noticed the change and wasn’t even sure that it was real. I really thought that I was reacting to being well again.

That thought did not last long. The very day that I resumed taking the Sprycel, I noticed an overwhelming sadness. It wasn’t that I was actually “sad” per se, I was actually "happy", yet a sadness had set up shop in my soul. I know that this probably makes no sense at all, but it is there; I am happy, yet have sadness; it is an oxymoron, for sure. I wasn’t thinking about the medication or the fact that I had leukemia. Taking the meds is now part of my routine and I really don’t think about it anymore. I really didn’t even put my finger on it until the second day.

Sprycel causes sadness in my soul; kind of like being embraced by a gloomy cloud. It is really hard to explain, but it is sort of like a cloudy day; while you may be having the greatest time of your life, if clouds are present, they create a different atmosphere than sunshine does. It is not a conscious sadness and it is not depression; I am still a “happy” person and a pure optimist, but I now am looking through smoke filled glasses as opposed to rose colored ones. Fact of the matter is; Sprycel makes me sad. Perhaps melancholy is a more appropriate word. When I figure it out and can put it into words, maybe I will write an update.

It is a very strange realization, one that I am not sure that I would have ever recognized if I had not been allowed to briefly revisit my old self. It is not listed as a side effect, but I wonder of others have noticed this change. I will tell my doctor at my next visit; my fear is that he will think that I am depressed. It is not a depression, it is not debilitating and it is not life consuming. It is simply a change in who I am; I prefer the old me, but I shall learn to like the new me, too. I will accept the fact that I now cry at more commercials than I used to and understand why the dead baby bird on the front porch haunted me for days. I felt so sad about the bird that I even cried for its’ mother. Ugh, I have become a sap! I miss the other me…..

Michele, so sorry you are having a rough time. I have had a very similar response - and I'm not even the one on the chemo! You describe what I am feeling perfectly - I'm happy, I'm not depressed, but there is a sadness about me now. Josh has been feeling the same thing. Praying things look up for all of us! :)

Strange, isn't it Laura. Oddly enough I didn't notice that I even felt sad until I was off of the Sprycel for 10 days and them went back on. Very weird; don't want to feel sad!We shall all keep praying!

Yes, we shall keep Praying Michele! I am so sorry your soul is sad, another unfair visitor (cancer was the first unfair and unwelcome visitor)... How long will you HAVE to take this drug?? Is there an "end" to this with remission? I Pray so... XOXOXO, julia

These drugs affect our hormones, this may be a reason for your feelings of sadness. I am also on Sprycel and I have had no other side effect apart from achey bones/joint pain. Probably the reason you had more energy off of the drug has to do with increased hemoglobin. In the beginning when you are newly diagnosed there are so many bad cells in your marrow that the drug, which is targeted towards the bad cells, kills off very effectively and this accounts for the reduction in hemoglobin, white blood cells etc. Over time, your body will start to produce more normal healthy cells. Once that happens, and it may take a couple of years at least, your hemoglobin will go back up and your white blood cells will not be so low. It is critical to stay as healthy as possible now to avoid having to stop the drug too often. You want to be able to optimize the drug by achieving the treatment goals of "complete Cytogenetic Response", "Molecular Response" and importantly "Complete Molecular Response". There is a study from Dr. F. Mahon on patients who have successfully stopped the drug and have not had a recurrence of the disease. More recently, he has reported on 7 patients who were treated with Sprycel who are now off the drug for at least a year without recurrence - this is very significant. These patients all achieved "Complete Molecular Response" and held it for a few years - so that is your goal. Don't let anyone convince you that you have to have these drugs for the rest of your life -that is not true anymore. Cheers!

Michele, You are not alone! As I was reading your post, it was as you were putting my thoughts on paper. I know exactly what you're saying, I am not depressed, I am a happy person, and also a true optimist. Everyone admires the way I handle things and how humorous I can be. I am in moledular remission, and have been for about 9 months, so imagine my "guilt" in feeling this way. I think you did a wonderful job in putting the feeling into words. Thank you

Well, you are very welcome, I was afraid it was a muddled mess! And I can totally understand how even though you may be in molecular remission, if you are still taking the drugs, they still affect the way you feel.Interestingly enough, I would never have even noticed the sadness had I not been taken off the Sprycel for ten days.My best to you!Please follow me, so I will know who you are!Michele

Ditto from me, too, Michele. My husband married a cheerful, happy woman, and he's commented more than a dozen times over the past 4 years about how sad I look now. Sometimes I'm not sad at all... other times I'm totally depressed. There are very few "happy" days anymore. Maybe the latter was caused from all the side effects. Now that I've been taken off Sprycel, maybe whatever route I go from here, that happy person will return. I hope so!

Michele once again I feel like we are in the same space. the last three days I have been so extremely "low" on the inside. I cant seem to get outta this phase. I am a very upbeat person everyone is always asking me how I can be so happy with all that goes on, Im happy because I have a life to live, I try to keep that in my mind and in my heart but as I said the last three days I have been a mess. I wanna be the old me. The woman I was before the cml. I want the energy, the girl that was known for her awesome work ethics, not the girl who has the CML. I think that you have the right idea by expressing your feelings letting them ou, by writting. You are an inspiration, you make me feel like its ok... My body is changing right before me and I dont know me anymore. Im 38 and a big mess of sadness inside.Thanks Bev

I was diagnosed with CML 11 months ago, Christmas day I started the sprycel. My numbers have gotten better and better every pcr test. I have no life threatening side effects but I agree 100% that it changes your mood. I was nicknamed "ting" in college because I was always smiling like the commercial for toothpaste with the ting noise. I always saw the glass half full and was an eternal optimist, I wasn't sure if it was the reality of the word Cancer or the Sprycel but I was not the same. It gives me comfort knowing it's not just me and that once off the sprycel (if ever) life goes back to normal, energy levels come back, and the personality returns to normal. I would really love to hear how you are feeling and doing today, 3 years later. Thank you for your words, they helped me like you will never know.

David Schmitt,I am so sorry that it has taken me a YEAR (almost) to reply! I don't know how I missed this comment!!How are YOu doing one year down the road? I am still hanging in there 4 1/2 years down the road; I have lost quite a few CML buddies the past few years, so I am grateful to be alive!Of course, there are still ups and downs, and I am thinking that sad as it may sounds, I have adjusted a bit to my new normal; I still miss the "old" me, but I try harder to search for my old self.Someday, I pray for a cure!

I was diagnosed at 25 years old last November. The big ole one year cancerversary is making her debut very shortly. Within 3 months of taking sprycel, I was already in remission and everyone was in shock of how well my body was like boom boom peace out cml....and I wanted to feel happy but I just couldnt.I I kept trying the whole keep telling yourself this is awesome placebo effect until it sets in - didnt work. For the past months, Ive been telling myself to just suck it up and stop being a victim to this and that there are far more worse cancers/life curves that could have been thrown AND still could be thrown. I feel guilty when I get sad about this cancer thing in which subsequently makes a self hate circle which brings me to google sprycel and depression. Cannot thank you enough for this post. I just want myself back and its really making me want to stop taking this TKI completely. Heres to not being alone! and also leading me to say a prayer for all of us tonight that THIS sadness will be swept away and the true, who God wants us to be selves, will surface.

Thank you for taking the time to send me a note; this sadness either gets better with time, or we adjust. It has been 4 1/2 years for me now.Please do NOT stop taking your meds; while it is really, really tempting, many people get into serious danger with CML by not taking their meds. CML can quickly turn deadly when least expected; you need to be monitored every three months and adhere to your treatment plan!

Wow! I came across this post accidentally. I've been on Sprycel for several years and done extensive research on side effects. But I have never read a better description of how the drug can affect how a person feels. Being embraced by a gloomy cloud. That is exactly how I feel. It's so encouraging to know there is at least one other individual in this wide world who truly understands how I feel. I don't know you and you don't know me, but you have reached out across cyberspace and made me feel so much better. Thank you so much.

I struggled with depression before the CML diagnosis, and it had been controlled well, finally. When I started the sprycel the depression returned with a vengeance. What you are describing IS depression, and is a known side effect of TKI meds. I'm worried I might have to discontinue the med. Depression is dangerous for me.

I have been on Sprycel only three weeks and I know exactly what you mean Michele. There is a sadness that has grown in me as well. I had two years of Gleevec with none of this.. I did cry easily for animals and such but now I think I am crying for the loss of the life I had. Maybe it is partly due to being alone but I am also elderly and until now I have just had my life and not cared. Sprycel has given me physical pain. I have been without symptoms other than white blood cell counts and I have been told they're is no beother issue than the ABL-BKR fluctuating and they wanted a better response but I have wondered how true that is. When you start therapy doctors are not always totally honest but I saw the blood results. So now I have some slight bleeding vaginally and that means I will have to see the doctor and I dread the long drive which hurts my back. So the sadness grows and I fight that hard. Good luck Michele.

I have been on Sprycel only three weeks and I know exactly what you mean Michele. There is a sadness that has grown in me as well. I had two years of Gleevec with none of this.. I did cry easily for animals and such but now I think I am crying for the loss of the life I had. Maybe it is partly due to being alone but I am also elderly and until now I have just had my life and not cared. Sprycel has given me physical pain. I have been without symptoms other than white blood cell counts and I have been told they're is no beother issue than the ABL-BKR fluctuating and they wanted a better response but I have wondered how true that is. When you start therapy doctors are not always totally honest but I saw the blood results. So now I have some slight bleeding vaginally and that means I will have to see the doctor and I dread the long drive which hurts my back. So the sadness grows and I fight that hard. Good luck Michele.

Thank you Michele for sharing your feelings. I am on Sprycel for almost 3 month now. I do feel sad and anxiety. I thought this was because of my on-going family issues. After reading you post, I realize it could also be the effect of Sprycel. I will talk to my doctor during my next visit.

Amazing that I came across your site. I was trying to find a reason to believe I wasn't going crazy, because I've been taking Sprycel for 6 years now since I was diagnosed with CML and I can feel my life deteriorating more each year. I'm definitely going through depression, but I do my best everyday to make my family think I'm fine...don't know what to do. Some days I just wish I could fade away.

Amazing that I came across your site. I was trying to find a reason to believe I wasn't going crazy, because I've been taking Sprycel for 6 years now since I was diagnosed with CML and I can feel my life deteriorating more each year. I'm definitely going through depression, but I do my best everyday to make my family think I'm fine...don't know what to do. Some days I just wish I could fade away.

Amazing that I came across your site. I was trying to find a reason to believe I wasn't going crazy, because I've been taking Sprycel for 6 years now since I was diagnosed with CML and I can feel my life deteriorating more each year. I'm definitely going through depression, but I do my best everyday to make my family think I'm fine...don't know what to do. Some days I just wish I could fade away.

Amazing that I came across your site. I was trying to find a reason to believe I wasn't going crazy, because I've been taking Sprycel for 6 years now since I was diagnosed with CML and I can feel my life deteriorating more each year. I'm definitely going through depression, but I do my best everyday to make my family think I'm fine...don't know what to do. Some days I just wish I could fade away.

I too have been on Sprycell and am happy to read I am not alone with my feelings. I have never cried so much. I have told my oncologist but he seems to fluff over the conversation. Basically I guess I am suppose to be happy to be alive. But is this "living" There are other things, sun, nasea and I had surgery months before my diagnosis and 1 1/2 yrs. later I am still healing. Also since being on Sprycell I've had bowel blockage and pancreatitis. I wish I knew what to do. I hate this, feeling sorry for myself.

I am so sorry, you are having such a miserable go of it! I pray that if you do not have an oncologist who address how you are feeling, then I urge you to find someone that will be in you corner!You are not in this alone! MicheleMeeeesh51@gmail.com

Leukemia Survivor (CML); I Am Dancing My Way Through

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